Telling your children

Immediately after being (mis)diagnosis as having ALS, our biggest dilemma was how to tell our young children, nine & seven. How would we ease them in to this new picture; prepare them for losing a parent and at the same time protect them from any sudden anxiety?

We received great advice on this from my local GP who is also a very good friend. He recommended we simply drip-feed information to them; give them bits of information over time and work with their curiosity. For us, this started by talking through the symptoms they could observe. In my case, we pointed out the weakness in my hand and foot. We told them that these parts of my body were not working well and the doctor’s were going to keep an eye on them.

What you share with your children will depend on how old they are. For very young children, ill health maybe quite an abstract concept, whilst young teens will have more questions and be more resilient to understanding the detail.

Talk about symptoms they can observe, they may notice these things anyway and so this will help with their understanding

Provide certainty where you can, i.e. what’s happening next – uncertainty can get filled with fear

Talk to them with your partner, so everyone is on the same page

Work with their questions, follow their curiosity

If they want to, give them a role in your care/wellbeing, this may provide some empowerment in a situation that’s out of their control

It’s very worthwhile getting some professional advice on this. A few links I’ve found that may help:

About these strategies

Welcome. These strategies are for people who’ve been diagnosed with a terminal or life threatening illness. If that’s you, I’m sharing them because I know something about what you’re going through, they helped me and so maybe they can help you too.